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Friday, May 25, 2018

Today involved getting paid to talk about all of the
things that make me happy, peaceful walks through
campus on a sunny Carolina day, and much-needed time
spent with delightful friends like Alana!

I will be a bit sad to let eighteen go next week and to move onto nineteen. I love eighteen. I love being a teenager. Nineteen feels too close to my twenties. I would like to stay right where I am; I have decided that eighteen is the perfect age. People are okay with me not knowing anything at all, I get to ask anything I want and people are willing to help, it is considered acceptable for me to request advice from every single person I encounter, and I am granted the privilege of soaking in the wisdom and experiences of those around me. I am allowed to abruptly admit, "I don't know," as much as I want without anyone scolding me. It seems as though being eighteen has granted me a special sort of permission to ask questions and to be wrong that will not last forever. I wish it could.

Per usual, the universe has offered me many lovely little luxuries to celebrate and to be grateful for over the past week. Pink pomegranate shampoo. Time spent with friends whom I could not possibly love more. Iced coffee. Summer work that I adore. Bright sundresses. Thunderstorms that seem to shake the whole world. Laughter. Free birthday month gifts from cosmetic stores. Changing fruit seasons. No surgeries on my calendar. These are all things that I love, love, love.

I am scheduled to increase my methotrexate dose tomorrow night. I tolerated the third dose perfectly, a welcome and shocking discrepancy from the overwhelming fatigue the first two doses caused, and my fourth dose (last week) resulted in only mild nausea. Please pray that this trend of not-dying-on-Sundays-post-MTX continues, because I could really get used to a lifestyle that helps my joints without requiring me to sacrifice a day that is so important to me each week. With the permission of my rheumatologist, I skipped this week's bloodwork and am holding off on upping my dose as scheduled. I know we will have to do so shortly, but I decided that I want to keep feeling eighteen this weekend, and I am grateful for a physician who understands and respects this. I am prioritizing the lovely little luxuries over the big picture this weekend, and my medical team is not making me feel like a terrible person for it, and that is no small miracle.

My health seems to be on a good path at the moment with this new treatment plan, and while there is still certainly room for improvement, I am grateful to be out of crisis-mode and to feel like I am capable of most of the things I want to do. When I am being honest with myself, I know that this will not last forever. Part of me feels like I am always preparing for the next flare.

And when the next health crisis barges into my ordinary, relatively healthy life as an uninvited guest? I will hate it and I will be disappointed and I will feel trapped inside of this body of mine. And still, at the very same time, I will have pink pomegranate shampoo, even when using it brings me to tears over joint pain and hair loss. I will have friends who invite me over and accompany me to appointments and call on tough days and cry with me, ensuring that I feel loved even when my body is destroying itself and I feel all alone. I will have tasks that I am capable of completing even when I feel incomplete. I will have thunderstorms that slam against my bedroom windows to remind me that the world is out there and out of my control and so are the cells in my body sometimes.

I want good health. I need good health to be who I want to be. And when it slips through my fingers, I hope I will remember all of the lovely little luxuries that have made eighteen such an extraordinary year even in the midst of deep fear and sorrow.

A beautiful beach on the Outer Banks, where I spent this past weekend with my gracious and hilarious friend Amelia! Amelia and I have been friends since before I was even diagnosed with juvenile arthritis. She has chosen to stick with me through the very worst moments of it, from painful days of not being able to walk down the school hallway in the sixth grade to scary systemic symptoms that began in the fall and continue to hover over me now. I could never thank her enough for her kindness, and I am eternally grateful for our shared love of all things British monarchy-related.

I spent several months of eighteen feeling like I had no age at all, like I was just a sick body without any true properties, floating between cold, metal stethoscopes, overwhelmed by pain in a way no human being should ever experience, whether eight months old or eighty years old. Honestly, during a few particularly dire moments in the fall, I worried that perhaps I had already seen most of my birthdays. No medical team could seem to pinpoint why my health was collapsing so quickly and mysteriously. I chose not to verbalize this fear. I did not want anyone to worry. I was afraid that my fear was an overreaction. I only disclosed my heartache to one friend, on a particularly desperate day after another alarming but uninformative medical appointment. I sat on my bed with a box of Kleenex and puffy eyes and admitted through my sobs, "I am afraid of dying. I am so afraid of dying."

When I look back on all of the ways that my friends swarmed in with immeasurable support and comfort in the fall, I realize that it was silly of me to think that I would have had to explicitly define this hovering sense of existential threat to them. They already knew, and so they rushed in with everything they had to offer to a sick eighteen-year-old. I will forever be indebted to them for that.

I will miss eighteen dearly, but I am optimistic that nineteen will be much less turbulent from a medical standpoint (this is the point of the post at which Alana would physically pick up my hand and knock it on wood). I like to think that grand gestures of generosity and lovely little luxuries work in tandem to get all of us through each year, whether we are experiencing the worst or the best or both. Perhaps sometimes we need the bold, caring words of friends to lift us up, and at other times a pump of pink pomegranate shampoo will do the trick. What a funny life. What an absurd age to be. What a good one.

Wednesday, May 2, 2018

I cannot drive with my car windows down because of all of the pollen in the air. While this is admittedly a minor inconvenience, especially considering all of the much more major medical events of the week, from restarting a low-dose chemotherapy drug in the form of weekly methotrexate injections to receiving MRI results to scheduling a bunch of appointments for once I am done with exams to waking up with intense stiffness and pain in my lower limbs and fingers every morning so far, I am still mourning the loss of the ability to blast Lorde while feeling the sharp wind of the highway tangle my hair, in a way that completely blows this everyday joy out of proportion.

On Friday night, with a vial of methotrexate sitting on the desk beside my bed, alcohol swabs on my pillow, and a packaged syringe and needle in my lap, I pulled out my Spanish notebook and wrote what I later deemed to be The List of Humanizing Things, knowing that I might need it the next day. I was about to inject my first dose of the drug since I stopped it several years ago, citing a strong dislike of feeling like I had the flu once per week, which resulted in noncompliance which resulted in inefficacy which meant that we should try something else. My new rheumatologist knew within my first appointment with her how much I hate this drug, and so when she brought it up at my most recent appointment, her question was, “How would you feel about methotrexate?” with a cautious hesitance that I interpreted as sensitivity to my rough past experiences with it. I did not jump onboard, but when I found myself in Atlanta the next weekend surrounded by other young adults who are empowering and hilarious and strong, I typed out a message to my rheumatologist from my hotel room, expressing a newfound willingness to try methotrexate again during a fleeting moment of bravery. I am tired of my joints hurting and of other random systemic symptoms. I like to think that I am stronger and more capable of managing side effects than I was as a young teenager, but this is perhaps wishful thinking.

The List of Humanizing Things included quite the variety of activities. An excerpt is below. While this list was a spur-of-the-moment decision, I would encourage you to try it if you ever find yourself in situations in which you do not feel like a human being.

Watching Keeping Up with the Kardashians while covered in blankets and writing college papers

Wandering around Target in the least methodical way possible with my friends on rainy afternoons

Laying on the floor with my dogs and telling them about the other dogs I have recently met

Driving with loud music and my windows rolled down

Babysitting, and hanging out with kids in general

Going to the mall when with my sister, Hannah, especially when I should definitely be doing homework

Friendly conversations about makeup application with strangers in grocery stores

Going on excessively long runs in Audubon Park in the early evening hours

Spontaneous late night trips to the movies with friends on weekdays

Cooking overly complex vegan recipes and making an enormous mess in my kitchen

Saturday, my first post-MTX day in several years, was full of caring friends. At this point, I probably should not be surprised by how kind and selfless people are, but every single day I find myself stunned by unimaginable generosity. My first conversation of the day was with a friend who gently reminded me that resting is not a sin, and I genuinely do not know how I would have made it through the day without that. I held up better than I thought I would, considering that I definitely felt like I had the flu and was achy and feverish, but the day involved a lot of naps. I sat on a bench to call my mom and text a friend, and all of the sudden I woke up coughing, with inflamed lungs (apparently laying under a tree is not ideal if you have severe seasonal allergies, but I blame this on methotrexate-induced brain fog) and realized that I had slept through the start of lunch. Then I was sleeping in my room. Then I convinced myself to go to the beach - after all, if one is going to feel the inevitable side effects of powerful drugs, one might as well do so staring into the ocean, being reminded of a world that is much bigger than a small vial. I started out studying, and then found myself texting a friend (who also has autoimmune arthritis and takes methotrexate) with a great deal of urgency to ask if it was normal that I felt like I needed to lay down immediately, and while he was still typing his response I fell asleep. Then I was blinking in a half-awake state trying to figure out why everything seemed so intensely blue. I thought I had slept for ten minutes but it had been hours, and my body felt like it had been hit by a bus.

The prettiest, most peaceful way to start an MTX hangover day.

I did not realize that I had burned my face until my friends expressed concern. I initially attributed my skin feeling hot to feeling like I had a fever, especially considering that we were entering the time of day in which my body temperature likes to pop up for no reason whatsoever. When I finally looked in the mirror, I realized that I had made quite the mistake by falling asleep in the sun. The real saviors of the day were three elementary schoolers who ate dinner with me and entertained me with their antics, conjuring up amusing questions about “being a grown-up” and about seagulls, all of which I was completely unequipped to answer. As I found myself sweeping crumbs off of the table and promising that I would match my ice cream toppings with theirs later that evening, I realized how indescribably grateful I was for each of them. It would have been challenging to eat dinner with adults that night, and as I watched their three faces explode with laughter again and again, all I could think was, This day is so worth it.

After dinner, my mom imparted beautiful and brief wisdom regarding self-compassion when I called her crying because I felt so dumb and careless for falling asleep on the beach after taking a medication that makes me extra sensitive to the sun. A few minutes later, I received a text from my dad which was so empathic that I cried once again. I do not know why I expected everyone to say, “Rach, that was such a bad idea. You know methotrexate makes you tired and sensitive to the sun, why would you go out there?” because I am the only one who ever says those things to myself. But I did expect those words, and I was prepared to agree with them. Hearing the opposite, “I am so glad you got to go to the beach, and you are doing your best today,” sent me straight to tears of gratitude for all of these wonderful people who surround me with love even when I am not doing the same for myself.

When it was time for me to try to sleep through the symptoms for the night, I found myself a bit unable to pull it together. I called a dear friend, who let me get roughly two sentences into the methotrexate sunburn story before adamantly interjecting with, “I am not letting you feel bad about this.” A conversation that I had expected to be weepy turned into one that was only a bit teary and involved quite a lot of laughter and, thankfully, some practical sunburn care and cover-up strategies.

A tip for placing a pre-filled syringe with thousands of
dollars worth of Humira into a communal refrigerator:
borderline aggressive sticky notes.

In summary, my first post-methotrexate day in several years started with a gracious conversation with a friend, followed by reassuring conversations with each of my parents, and ended with a phone call with a friend who made me laugh and refused to allow me to seep into the guilt that comes with making medical decisions and trying to live a life at the same time. None of that even includes all of the friends who helped me in various, tangible ways despite not knowing that it was a particularly difficult day for me on all sorts of levels. None of that includes the kids that treated me exactly the same as they did on Friday and on Sunday, when I had much more energy and less pain. “It was such a good day,” I told the friend I called from the beach over dinner last night. It was not a statement I ever thought I would be able to make about my first post-methotrexate day in a long time. It was a beautiful day. I felt horrible. I felt so loved and so lucky. I quite like this life I am living.

The day after I returned from the beach, I weaved my way through the hospital for an appointment in which the attending and chief resident verbally went through my entire case, test results, and recommendations/treatment plan in my patient room. They faced a screen, talking only to each other with their backs turned towards me, never acknowledging my presence. Once their conversation was over, the chief resident turned towards me, introduced himself, and proceeded to repeat this information in a condescending clinical tone, as if I had not heard their entire conversation from approximately one foot away.

I left the appointment wondering if I was real. I pinched my cheek in the hallway of the hospital to make sure I was there. I had not been treated like a real person with ears and emotions and questions and a life. I felt completely dehumanized. I called my mom to tell her how rude they had been and to rant about how screwed up the entire medical system is, as one must do every now and then. She sympathized and reaffirmed my human dignity. Despite her unquestioning support, I have spent much of yesterday and today having to repeatedly remind myself that I am a real person who is here and is present and is deserving of the basic consideration of attendings and interns and everyone in between. I found myself pulling out The List of Humanizing Things yet again, except this time in the context of dehumanizing appointments rather than immunosuppressive drugs. The most appealing option was blasting music and riding with my windows down - this is almost always the most appealing option in my book.

So what do you do when the thing that will make you feel the most human is prohibited by lungs that refuse to breathe in the presence of pollen? I do not have that figured out yet. I miss the outside, especially on beautiful days like today. Sometimes I choose quality of life over strictly medical decisions, as I did on Saturday by venturing to the beach instead of resting in my room. I know that if I roll my car windows down, my breathing will impede my quality of life enough to cancel out the psychological benefit. I feel young and unqualified to weigh all of these decisions. I fear that people will either think that I am not resting enough or not doing enough - how will I ever manage to get it right?

Perhaps I never will. Or perhaps when my frontal lobes are fully developed I will find myself much more confident in my ability to make these decisions. I have no idea. But I know that despite injecting a disgustingly-colored poison into my stomach, and despite feeling overcome by the methotrexate flu, and despite a dehumanizing appointment, and despite not being able to roll down my car windows, I am having a lovely week full of humanizing things. I am hopeful, although admittedly skeptical, that this will not be my life forever. I am hopeful that this immunosuppressant will result in dramatic medical improvements, and I am hopeful that the side effects will lessen as my body adjusts, and I am hopeful that doctors will be more considerate of my humanity, and I am hopeful that we will develop a much better way to treat allergies. Even if none of these hopes are realized, I am glad for weeks like this one, to look back on as a reminder that even though good health would be an excellent addition to my life, good people are enough.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!